Part One

June is National Scleroderma Awareness Month. All my posts in June will focus on my personal journey with scleroderma. If you’re a regular here, you may notice I changed my blog background to teal, which is the color designated for scleroderma. This will be fun, just like an HBO mini-series.

The only differences are:

1. I don’t have a cool theme song (I’m working on a fun little ditty, don’t you worry).
2. There’s no male narrator with a super deep voice chronicling my story with nail-biting cliff hangers at the end of each segment.
3. Sorry, no famous people either. Though, I do think Kate Hudson would do a great job playing me. It’s uncanny how much we look alike. (I’m being sarcastic people—work with me).
4. Oh, I guess the last difference is that my story is not actually a mini-series on HBO. It’s just me and my laptop working on this production.

Let’s start with my diagnosis story, shall we?

1985-1992: The Early Years

 I will forever associate the sound of my childhood gym shoes squeaking against industrial tile floor with the diagnosis that altered my life in irrevocable ways.

“Lisa, why don’t you go out into the waiting room so that I can speak with your mom and stepdad alone?”

My rubber soles squealed against the avocado green tile floor, breaking the strong silence that had engulfed the small examining room. Slumped over in an orange plastic chair, I casually leafed through the latest editions of Highlights magazines. My mother finally emerged in the waiting area, clearly trying to maintain her composure as my stepdad disappeared in the opposite direction. “Well,” my mother smiled, “I guess you’re going to get a new nightgown, because the doctor wants to admit you into the hospital for a few days to run some tests.”

Wow, a new nightgown, I thought. The only other time I had been to the hospital was when I had my tonsils removed. I had gotten a teddy bear, a coloring book, and all the ice cream I could eat. Surely this hospital stay would be similar. Nothing to do now but tackle the exciting task of packing. I’m not sure if I had a typical 10-year-old response, or if I was exceptionally dense.

Thirty years later, my mother and I have never discussed what the doctor told her in the examining room. I can imagine she explained their diagnostic suspicion of scleroderma would be confirmed through a series of tests that I would undergo during my hospital stay. The doctor probably clarified that scleroderma is an autoimmune disease that can affect the body both internally and externally.

I suspect the doctor outlined the best case scenario would be that my disease would only impact me externally. This would involve serious skin tightening in all joints, causing limited mobility in my fingers, arms, and legs. The tightening of the skin would also cause my limbs to look anywhere from slightly to severely deformed, being that they would be unable to fully contract and extend. Other external effects would be the progression of telangiectasia (red spots) all over my body. I could expect to develop Raynaud’s Syndrome, which is the highly sensitive reaction to cold that one’s hands and feet experience, often turning blue, purple, and white. I’m sure the doctor told her that the deposits on my fingers that the dermatologists had been treating by freezing for the last year were not actually warts. Rather, they were calcification deposits, which would continue to form on my fingertips and elbows, causing sharp pain and swelling whenever they were casually knocked in everyday activities.

I’m sure what made my mother look as if she had been crying was the worst-case scenario. Inevitably, the doctor must have gently explained that scleroderma could affect my internal organs. This could lead to sclerosis of the esophagus, lungs, heart and liver, which would significantly limit my ability to eat and breathe, and could impact kidney function. Though new medications were being explored all the time, most people with this form of scleroderma do not survive more than seven years due to the toll the disease takes on their major organs. Perhaps the doctor went on to explain that scleroderma is extremely rare and juvenile scleroderma is only found in two percent of all cases.

My mother did not share any of this information with me. All I knew was that I would be admitted into Children’s Memorial Hospital in Chicago for some tests. This adventure turned out to be even more fun than getting my tonsils out! I received three nightgowns, four flower arrangements (one that looked like a real ice cream sundae) books, stuffed animals, and magazines. My roommate and I had a great time playing on our automatic beds, seeing who could go up and down the fastest. I had to endure a very painful skin biopsy, dozens of X-rays, a barium swallow, pulmonary function tests, and constant poking and prodding by wide-eyed residents—I was quite a novelty to them. This was a small price to pay for the benefit of having my very own television and remote control.

At the end of my hospital stay, my mother told me that I had a skin disease called scleroderma. She explained that it was no big deal and all it meant was that my skin was tighter than most people’s. Confidently, my mother assured me that all we had to do was come back to the hospital every six months to repeat the same tests. My mom advised me not to talk about this diagnosis with anyone.

I spent the remainder of my childhood doing everything I could as a “normal” kid. There was just one problem: I wasn’t normal. Although it was impossible for me to sit on the floor comfortably, do sit ups, or run without getting out of breath, I always participated in regular gym class. I would accidentally bump into my locker and have my elbows swell for days, keeping me from bending my arms at all, while calcium oozed out of my joints. The telangiectasia (red spots) continued to form all over my body and tactful strangers often asked me if I had chicken pox. My skin did tighten significantly, causing dental and orthodontist visits to be a real treat. No matter how many Snickers bars I stuffed into my mouth, I couldn’t keep any weight on my bones. I looked like a walking skeleton. In junior high, nothing says ‘cool’ like a deformed skinny girl who leaks calcium from her fingers and elbows involuntarily.

Having no tools to effectively explain scleroderma, I was very uncomfortable discussing my illness. I avoided telling people the actual name of my disease or even acknowledging that I had a disease at all. When asked about my appearance, I would often say that I had arthritis. Somehow, this seemed easier, as it did not entail a long explanation. Denying my illness also kept me from receiving the inevitable look of pity from any person I told. I didn’t want anyone feeling sorry for me and I still don’t.

I tried to ignore people when I heard them whisper, “Why is she so skinny?” or, “Look how her elbows stick out and are so pointy.”  I would act as if I couldn’t hear these comments, since they were obviously made by people who thought I also had a hearing impairment. Inside, I would crumble each time I heard such comments. I hated the fact (and still do) that the first thing anyone thought when they met me was, I wonder what’s wrong with her.

Of course, as I got older these whispers turned into bold statements and questions that I was directly confronted with. High school students are not known for their sensitivity and tact, so that was a particularly difficult time for me. Coed volleyball in gym class was especially delightful. Since my fingers would swell for days if I made contact with the ball, I would avoid it at all costs. That’s just the thing teammates like to see—a girl frantically running the opposite way every time the ball flies in her direction.

The spring of 1992 marked my graduation from high school and seven years since my scleroderma diagnosis. I didn’t know it at the time, but living with scleroderma for seven years marked a significant triumph against the disease.

Cue the narrator: “It appeared Lisa had beaten the odds and her condition had stabilized, but what would happen when she went away to college? Stay tuned for the next episode of Scleroderma: The Mini-Series.” (Insert theme song that I have yet to write.)